My journey as a woman and mother of young children who is dealing with metastatic inflammatory breast cancer

Here we go again…

the hair is coming out again, but I suppose if you have to be bald, summer is the time to do it. Appropriately enough I was at a conference for Women with Metastatic breast cancer in Philadelphia when it started to come out en force. It was really nice to be in a room full of women who ‘get it’. Everyone there is at stage iv, most have active disease although some currently are hanging out with NED (no evidence of disease). I got to see two of my fav warrior women while I was there which was nice, and I made some new friends too. All of our talking there has led me to feel like there are a few things I want to say here, and I’ll admit up front that they all are not politically correct. I also know that several of my friends get concerned about what to say to me and what to not, or feel guilty when they vent about their problems and then they think about mine.

I understand that everyone has problems, they are just different. I don’t discount your problems because they aren’t a life threatening disease and I don’t expect you to live your life looking at it from my perspective. I don’t want you to be worried about everything you say to me, but I do ask that you be sensitive to my situation too. Some days I can laugh at some of the comments made to me and other times I want to say “Really? I’m the person you chose to say that to?”

Sheryl Crow was on Dr. Oz last week, and she is a fabulous spokesperson for early detection and cures and I am truly happy for anyone who is diagnosed with canser and who is ‘cured’. Whatever kind they had. Telling me a story about someone who was diagnosed at stage I or II and is now cansir free and has been for 25 years is not a story for me though, our situations are very different. At this conference one of the first things they did was ask for a show of hands, “How many have been diagnosed with mets for a year or less?” Maybe a quarter of the hands go up. “How many for 2-3 years?” – Maybe half. So at less than 4 years we have accounted for probably close to 3/4 of the women in that room. That doesn’t leave enough who are still with us after that third year. While I am doing my best and I really want to and plan to be here for a long time – when I reach that goal, I will be defying odds.

Hearing the word cancer will scare anyone, if it doesn’t there is something wrong, but that being followed up with “but it is highly curable and we expect to be able to take care of it” is entirely different from “it is stage iv and considered incurable” – yes both people have cancir but please understand that the perspectives are different. I’m scared all the time about whether or not I’m going to see my son even start Kindergarten let alone see my kids graduate from high school and college.

Please don’t tell me that “Any of us could be hit by a bus and die tomorrow.” Yes we could, none of us are promised tomorrow, but the likelihood of that happening is exceedingly slim for most people. In my case, the bus is down the street and I can see the headlights. I just have to make sure I can get away from it with my feet encased in concrete and it isn’t easy.

It is my sincere hope that none of you ever have to live with this, the reality of it is that about 1 in 8 of my female friends reading this will.

And one final note… I know this has been going on for a long time, a year this week actually, and I know a lot of people are wondering when I am going to be ‘finished’ or ‘better’, the answer is that I don’t know and that I probably will never be finished. The reality of a stage iv diagnosis is that technically I will be ‘in treatment’ for the rest of my life. Finished with treatment will mean I’m dead. Even when I get to NED I will still get regular scans and will probably be on some kind of medication to try to keep it gone. Right now I am on a chemo that is kicking me hard, I am really tired and often kind of nauseous and not terribly hungry. Most things are just not appealing.

I know this is strange when we are so used to people finishing treatment and ‘that is that’. My hope is to meet NED and keep at this for a long time, I have two beautiful children to raise, I’m not finished yet.

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4 Responses

You are an incredibly resilient and wise lady. I mean…. Warrior. I never thought the word “survivor” captured the essence of what we become through our journey with breast cancer.

A 20 year survivor told me, when I was diagnosed with Inflammatory Breast Cancer… “No matter what statistics they throw at you….no matter what the odds, always believe in your heart that you will be in that top percent. Even if it is 1 percent. Someone gets to be that percent… Why not YOU?

Elizabeth, it is totally my plan to be in that percent. One of my favorite phrases is “The only statistic I am concerned with is mine” – I don’t read them. They include too many variables. It is just frustrating to realize the way that it turns out the majority of the time. I saw a great shirt this weekend… “Screw awareness, Find a cure!”

Well said, Ashley! I cringe a little bit everytime someone tells me I am strong and I will “beat this thing!” I know they don’t really understand and mean well, but that comment always hits me hard. I try to explain that there is really no “beating” stage IV for good, just beating it down (which I plan to do)!!

I think about you all the time. Try to hang in with that red-headed b*tch! Hopefully when I get back from Texas we can get together.